Deja Vu

I met with the mother of a newborn with DS yesterday. The little girl is beautiful. She has no heart or organic issue and she seems to be doing just fine. The mother is still really sad, somewhat in shock, and stuck with a thousand questions ranging from training, doctors, to the future 30 years ahead. I recognized myself in so many of the things she said. I also realized how far I have come in my own head.

I remember hating everyone for being so positive about my child having DS. Noone really got it, I thought, I am not like them, I will never be that fine with my kid having a bonus chromosome. Just having to say Down Syndrome was as painful as putting a needle in my eye. The worst reaction by far was the two people who asked us what DS was after we told them, and said as long as it is not mongolism (that r-word again) it is fine… I cried a lot. I woke up in the middle of the night with the word Down Syndrome pulsing in my head with every heart beat.

I also remembered so many people telling us that Vince was so lucky to have us as his parents, cause we were both so strong. I kept thinking to myself, what the heck are they talking about, why would WE be strong? How? There were so many scenarios that I was deadly afraid of: the day people would confront me with Vince having DS, getting stares on the bus, or people just assuming things that are wrong. Some of them I have learned to live with, others I am getting a dose of it every now and then, and I am getting better at ignoring, listening and replying without reading too much into it. A lot of times it is just about a lack of knowledge. A lot of times it still hurts.

I remember having a conversation with Bookie and I think Vince was 2-3 weeks old. Bookie told me that he had not seen me laugh in a long time. If you have had the chance to meet Bookie, you know that he is someone almost always smiles – makes me nuts sometimes – but he is the most positive person I have ever met. I do not know now if that was the turning point or not, but I seem to remember that day pretty clearly. 

Now I see it in a different way, the whole issue with having a person with DS in the family. I often forget Vince has DS. I often think it is actually kind of cool – Vince is unique in so many ways, and I am thoroughly excited that we can help raise awareness. I think Bookie and I got lucky having a child who could really open up a new world to us. I don’t think we would have been where we are in life today if it was not because of Vince.

I semi-often get the question if the next time (if there is one) I am pregnant I will do any testing to find out if the baby is ‘typical’ or not. We already know that we are not carriers (Vince has Translocation 21;21 – the only type of DS that if you are a carrier of the gene, you can only have children with DS) I don’t know if I will, but I do know, that I will not abort the baby because of a diagnosis. And I do not regret Vince one bit – the little bogger! To us, he is just the most perfect little kid anyone could wish for.


16 Responses

  1. Reading about and seeing the pictures of you being so much in love with Vincent is just heart-wearming!! He is one lucky little guy to have you and so are you to have him.

    There are several reasons I keep reading and reading your blog – first, I simply love the pics of your boy and Ramona goes nuts when we watch some of your movies, second, I am always excited to follow the progress of the Vincent Store, but also because a year ago you pledged to owe it to yourself to raise awareness. If it hadn’t been for you I wouldn’t have known half the facts about Translocation 21;21 and the joy, fear, doubts and happiness it can bring along. So thanks for that!!!!!

  2. Christina, we are soooo lucky to have you! The world needs you and your positive attitude. It’s not our kids – it’s our poor society. Yes, we’ll have still plenty to do …. Here’s to Vince!

  3. Thank you for visiting that mom.

    Talking to another mother of a child with DS was the only thing that helped me at all, that first week.

  4. This mom was so lucky to have had such a positive perspective presented to her. I’m glad you could be with her.

    I know completely what you are saying about being lucky. My Vince and I feel so lucky to have Delphine.

    Vince look so peaceful and cute sleeping away! I love his blanket – it’s cute!

  5. Being a mom (albeit of a little boy without DS or any disability- knock on wood) has totally changed my feelings about elective abortion in the case of things like DS. When I look at Vince I just think “OMG what a charming little guy!” and then become horribly sad at the thought of aborting someone just because of that one stinkin’ extra chromosome.

    Your son is totally charming. And one of the reasons why I am pretty much going to skip the genetic testing for any future pregnancies that I have. 🙂

  6. What a wonderful post! I feel exactly the same way. Your words are so true for me, and I wish more people could understand that love makes us all blind to differences…what we see is gifts, to be treasured.

  7. Very real. Very true.

  8. One of my favorite passages of Henri Nouwen, a renowned 20th century theologian talks about that awareness……… Nouwen spent the latter part of his life living in community with individuals with disabilities. In speaking about his experience Nouwen said, “I see without hesitation here how much they give to those who are able to receive. They give generously and without hesitation. They give their hearts. What for us “normal” people often remains hidden behind rationalizations, preoccupations and fear is for the handicapped people the most available gift. They share their love, joy and gratitude and also their anxiety, sadness and disappointment with such directness that we are challenged to respond from our own hearts. They put us in touch with our often hidden gifts and weaknesses, and become our healers, without even knowing it.”

    My journey has been a bit different, as my daughter Emma Sage was my last child. She was concieve exactly one year to the loss of my fourth child…so I was so fearful of loosing her, that the thought of the possibility of her having Down syndrome [we had a few softmarkers during my pregnancy] that when she was born with T21, I was more relieved that she was here on earth alive, that her Down syndrome was insignificant to me.

    But I agree with you……I am a much better person because of her, and my relationship with my husband has strengthen and my other children have blossomed into incredible young people, I believe because of the gifts their sister has brought to them and to us.

    It is like you look at the world through new eyes…..and I for one, am so grateful that my life journey has taken this route.

    Would I have signed up for this journey, most likely not……so I am so, so thankful that fate had her hand in my life as to give me such a gift and awareness.

    I so love reading your blog……and someday I hope to meet your sweet prince.

    Peace, Tara Marie

  9. Hej,
    Så oerhört klokt och klarsynt du skriver. Det är ju faktiskt ett val vi har som människor, att växa eller vissna.
    Stor kram till dig och din vackre prince och den alltid leende Bookie!
    Izas farmor Åsa

  10. My sentiments are very similar to Tara Marie’s

    When Meg was born, within a couple of days she wasn’t waking up properly, wasn’t feeding and was essentially shutting down to die. She spent 2 weeks in the hospital being fed via a tube through her nose until she was strong enough to come home.

    All I wanted was for my little girl to live. The DS, by comparrison was such a minor thing.

    Then when she was 5 months old she had to have open heart surgery to fix several holes in her heart. We again had to face the possiblity she could die. It was the worst experience of my life.

    Down’s syndrome is such a minor consideration when faced with the life or death of your child

    Now she is 9 and is a healthy, thriving child.

  11. I’m sure this mother was very comforted by your visit and meeting Vince; even if she might not have said so. It is hard in the beginning just dealing with the diagnosis and coming to terms with all it entails. It’s just such an unknown, and really so scary to think about everything. Praying for this mom to find peace; and I hope you two can become friends.

  12. Christina,
    I think it’s wonderful that you got to meet with another mom of a newborn. I can only imagine that Vince charmed the pants off of her 😉 He is so darling!

    I think you have done an amazing job of raising awareness, and that you are a wonderful mom and individual 🙂 If I get to Austria one of these days (a possibility in the next 5 years or so….) I hope we can meet up!!!

    Acceptance comes at different stages for different people, and I hope this mom will fall as hopelessly in love with her sweet baby girl as the rest of us have with our kids. I just don’t know how you couldn’t – they’re all so cute! But, I do think in the beginning you’re trying to wrap your mind around the future and looking far ahead and seeing the what-ifs, and reflecting back on the little you know about people with ds, which, in my case, was not very much!

    But, as people, like you, share your adventures, your experiences, your beautiful son – it changes everything 🙂

    Thanks for sharing Vince with me – he is a ray of sunshine!!!

  13. Wonderfully written…Vince is absolutely adorable…I honestly don’t even remember how I came across your blog, but I know I loved it instantly. I have never looked at Vince and thought anything other than what a cute and wonderful kid he is!

    By the way, he looks so cozy there in his bed! Maybe I should try giving Hailey a blanket or pillow now to sleep with??

  14. I am so glad you had the chance to meet with her…and I hope you can stay in touch. And I hope, hope, hope she has a link to your blog.

    I consider us lucky too…I am completely amazed at Jack. I don’t want pity, or apologies…Jack is such a blessing. I am incredibly thankful.

    Todd and I talked about this just today. And we are so ready for another baby…and if they have Ds or not is so not even an issue anymore. Because if I had known then what I know now…I wouldn’t have shed one.single.tear.

  15. I still remember one of the ‘new’ mums that I was asked to speak to as an ‘oldie’ – it was like oner of Hannah’s developmental milestones – but for me. I bet your talking with that Mother really helped. I find talking to new mums helps me too – to see how far on my journey as Hannah’s mum I have come.

    Just think – some day in the future that new mum will no doubt be asked to speak to another new mum – and so the cycle of support and h elping each other continues … part of that wonderful world that we may not have got to know without that extra chromosome.

  16. Even though I am only 6 weeks into my journey with my daughter (diagnosed with t21 at birth) I am amazed and grateful for the wonderful people like yourself whom I have been introduced to. I am sure that you helped the new mom SO much. I still hang onto every positive bit of encouragement I have received from fellow t21 parents. I hope that someday I can make it through the initial shock and grief and help someone else.

    Someone once said to me that although this is not a club you would sign up to join, it is a wonderful and amazing club to be in! I think they are right!

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